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In a homeschooling house full of 7 kids & 3 guniea pigs....there is never a dull moment! A lot of people show genuine concern for us and want to know how we are doing, as the road we've left behind was not a pleasant one. So, here I am, to tell some of our stories...share some of our days...and open up a part of our world to you! Come join us on our journey so you won't miss the moments that take our breath away!

Thursday, January 27, 2011

If only love would make them grow...

Emu and Duckling have both had issues with growing...or actually...not growing! Each having their own completely different unrelated issues!

For Emu, his height growth halted when he turned 2. Now, at 4 years old, he is the same size he was a few years ago. He is a few pounds heavier, but he is still the same height! He can wear some size 3t without tripping over them, but he still sports quite a few size 18month and 24month pants. At his 3 year well check it was thought that he hadn't grown over the course of his last year. His pediatrician decided that possibly there was an error in his measurement somewhere and decided to "watch" him, rather than put him through testing quite yet. As she requested, I took him back 6 months later for a weight/height check. After comparing his growth charts, she said he had grown and she had no worries, even though he was still very small. At his 4 year check up, he checked out healthy (still questioning Autism Spectrum or ADHD, or as his "daddy" says, he's full of energy) but, it was then discovered that he had "shrank" and was back to the same height that he was at that 3 year check up a year before, so apparently...he was acually mismeasured at that 6 month check up appointment and he hadn't really grown at all. He was sent for a "bone age" xray and those results were "borderline abnormal", which was not a good thing, because this meant that he would NOT be expected to "catch up" later and have a major growth spurt. He was then sent to the same Endocrinologist that Duckling sees. At his initial appointment, I requested that due to his history...we get right to testing his growth hormone. I was familiar with what to expect because we had gone through this with Duckling just 6 months before. I had actually refused this testing initially with Duckling, but intuitively felt that is was necessary for Emu. She instructed that we could discuss the possibility of testing his actual growth hormone at a later date, but first had to do the initial workup then go from there. I always thought something just wasn't right, but people tell me I tend to worry too much...so, I hoped that this time, I was wrong...and after all...Duckling is small too, so maybe it was genetic! When the phone rang today and Hawk said it was the Endocrinologist...I just knew. She said everything came back ok, except his "growth factor"...it was very low. This indicates that he actually does have a growth hormone deficiency. So, for him...growth hormone testing is necessary. So, now we await his day long visit to the hospital so that he can have his actual growth hormone tested. This is a 4-8 hour process in which they draw his blood every 10 minutes. They have to do this because the growth hormone changes constantly! If it is confirmed that he does have a growth hormone deficiency, then they may look at possibilities of other syndromes being the cause, but regardless...he would have to have growth hormone (daily shots) in order to grow.

It's amazing how things like this don't upset me. I feel somewhat guilty for not being upset, but...I know that no matter what is wrong...we will get through it. He's healthy and thriving...he's just small. I will do the same as I always do...I will research and learn everything that I can about what is wrong, so that I can make an educated decision and do what is best for my child. As I talked to my brother about Emu tonight, we were able to laugh and joke about Emu being 40 years old stuck in his little 2 year old body...riding down the road in his little Razor motorcyle. He was glad to see that I could laugh about it rather than being upset and crying. I guess you just become this way when you've been through all the things that we've been through. Small things like this, don't seem to be such a big deal. It's kinda the same as when Duckling was born and I found out that she was deaf in at least one ear...it really didn't matter...she was healthy and she was here...that's all that really matters, the rest is just about adjusting to their differences and coping the best we can.

Duckling has always struggled with her weight. When she was just a week old, she was hospitalized for having a dramatic weight loss...dropping down to just 4lbs. 8 oz. She wasn't dehydrated so they knew she was getting enough to eat...they couldn't find anything medically "wrong" with her and she was released after a few days. She always struggled with getting enough liquid intake, then when she started solid foods she had issues with projectile vomiting and numerous ALTE episodes. She was then diagnosed with numerous food allergies and later went on to have problems feeding. She was in numerous therapies to "learn" to eat and for her multitude of delays. Her high chair had to be specially adapted for her due to her small size and motor delays. She saw specialist after specialist...never getting any "real" answers. Just as she got to the point of needing a feeding tube, she came around on her own, but just barely keeping the GI specialist from tubing her. As she was months away from her 2nd Birthday, her GI specialist still wanted her calories to come from her special formula and only wanted her to eat enough food to not loose the skill of eating..this was not a practice that I was ok with, so we stopped going. We moved and started all over with different specialists. Her new GI, and Nutritionist agreed that "she's just genetically small"! She was sent to Endocrinology and her workup there showed no syndromes or genetic disorders causing her to be so small. It was possible that due to her unusually small size, she may qualify for growth hormone, but I initially refused growth hormone testing and agreed to have it done if she didn't grow in a 6 month period. When we went back for her 6 month check up with Endocrinology, she had grown in height but not weight. Since she had grown in height, it was not necessary to do the growth hormone testing on her, but her weight (just 23 pounds a month shy of her 3rd birthday) is still a concern. We met with one of her nutritionalists the other day and according to their scale...she is gaining weight...2 lbs since they last saw her. Since her food/fluid intake is so small, they are really pressing for us to give scheduled snacks in between meals. She said that she can't possibly gain weight in the small amounts of foods that she eats for her 3 meals. We had cut snacks around here out of fear that it will ruin their appetites for dinner. They didn't have a lot of tips to offer, just the basics...add butter, powder milk, peanut butter, yogurt, whip cream, cream chese, etc. etc. to any foods we could. I came home and researched her theory on toddler snacking and couldn't find one article or website that disagreed with her. So, I dug through my file cabinet and found all of the useful handouts we got from one of her therapists on adding calories when she was just an infant struggling to eat anything at all. Back then, the GI doctor was trying to have me add oil to her formula...seriously, who would drink that and it just didn't seem healthy.

We've tried most of these things in the past and surprisingly the kids love quite a few of these things. So, for now...we will go back to scheduled snacks between meals and I will make a point to make at least 1 or 2 snacks a "Calorie Booster" packed with a punch! After all...every calorie counts...even though they won't help Emu grow!

In the next few days, I will work on putting toghether all of the great ideas for adding calories for those kids that struggle with weight gain....

5 comments:

My son has also struggled with weight gain. He was doing fine for the first 8 months and then his growth curve stopped being a curve and is a jagged line (like a heart monitor line). He has had so many freaking tests!!! We were sent to a Pediatric GI specialist, had to work with a dietitian. Nothing really changed, they couldn't find anything wrong. The Pediatric GI finally said that they teach you in medical school to stop looking at the numbers and look at the patient, he's active and happy and learning. So she said we should stop worrying so much.

Unfortunately we just switched insurance so now we'll have a new pediatrician and I'm afraid that going in for his next appointment is going to mean starting another round of "why isn't he growing". I do want to push for allergy testing because I think he is having some food allergies (his cheeks are always red and sort of rashy) and I can't easily do an elimination diet to see what it is that bothers him because there's so little he will eat.

The nutritionist really insisted that we add Carnation Instant Breakfast to his milk to get some extra calories and nutrients in him and that did seem to help. She gave us printouts of food suggestions but for the most part he won't eat the stuff suggested. I mean, my son will eat my homemade wheat bread (even the crust), but he won't eat it with butter on it. He'll eat broccoli spears & carrot sticks, but won't dip them in some nice fattening dip!

At least he's stopped having his gagging issue that plagued his eating for so long. Now he only gags and vomits when he shoves way too much food in his mouth at once (looks like a little hamster), for the longest time he was stuck on pureed everything because he would gag on the textures. Oh, and i was supposed to add olive oil to those purees--- no way would he eat them then!

He's supposed to have 3 meals, and 3 snacks--- but sit down at those times, no grazing on food in between. And to serve the food first and add a drink later so that he gets calories from the food first.

Good luck with getting your kids to gain weight, I really do wish love would make them grow!

Have you tried cyproheptadine? my son was on this for a long time. an appitite increaser, also helps with allergies! yay kills 2 birds with 1 stone for us lol. also theres a power we had to add to literally everything sebastian consumed, it started with a p. sebastian was in failure to thrive from 19months til age 3 his brain stopped growing, he is now 6 and still getting the effects. theres things you can do, but also family genetics play the biggest part.

My son dropped off the growth chart at 2 as well. I know all of the tests you are talking about and they are scary and awful to watch your child go through. However, our son is now 11 and we have been doing growth hormone injections for 6 years now. He is on track to be in the 25 - 50%. The nightly shots have become routine and no big deal. Just normal life to us. He even does them himself now. I guess I just tell you all this to let you know that we are on the other end of it and know where you are right now. Hang in there!

KateE-I know what you mean. Luckily, my daughter's doctor's had the attitude...as long as she has her "own" curve and "is" growing, then we won't worry as much. Now, she is kind of just holding steady, but at least she isn't falling backwards yet. So far, they truly do just think it's in her genetics...but, we do know that her intake (solid and liquid) is not anywhere near where they want it to be and it never has been. So, we still have some work to do with GI and Nurtition, as Endocrinology has referred us back to them. I think too, that she has just been accustomed to relying on liquid nourishment for so long that she just simply doesn't "want" to eat. With her food allergies she was so limited to what she could eat and it was mostly rice, fruits and vegetables so she barely got any calories from those things. I will have my calorie boosters post up very soon, and I think that you may find some very useful tips!!!! :D I'd be interested to know if some of them work for your little one. It's amazing how many calories you can add to pudding without changing the taste. Also, I have noticed for myself...once you have the mindset and information...you find yourself adding calories to everything you make for them. Tonight, we had Rotini and Italian Sausage. I scooped out a seperate bowl for my babies and added about 3TBS of extra butter to theirs and served them that. It didn't even change the taste of it and they gobbled it all up. Some of my kids favorite snacks are the pudding, and Puddingwiches (special pudding mix that you sandwich between two graham crackers, then freeze them) both are loaded with extra calories.

Mari-The GI did mention the last time that we were in there that we may have to go to an appetite enhancer, so I wonder if that is the drug she was referring to. I am going to request in when we go back for our visit, I don't think she will be oppossed to the request. Does your son have a particular disorder or syndrome that caused that to happen to him?

L Hwwkins - Thank you :) It's nice to have supporting words from someone who has been where we are. Right now, waiting is the hardest part. We aren't 100% sure that he is growth hormone deficient, but it sure appears that way with this first round of tests showing this growth factor so low. Do you mind me asking, if your son dropped off the charts at 2, why did he not get shots until he was 5? Is he only growth hormone deficient or does he have a syndrome? I'm still really confused about that too. The process seems so long to me, as a parent they don't seem to do things fast enough. It's very scary to me to feel like we may have no other option than the shots, I did do a little research when I was told to do so for Duckling. After about the 3rd article I read, I said, forget it, she is not getting it...but then again, this would have been a "choice" not a "need" for her, with Emu, his case seems to be a little different. I just don't have a full grasp or understanding quite yet as to what this all means for him. He hasn't grown since he was 2, does this mean he won't grow at all anymore without it and what about other health problems? The Magic Foundation's website is somewhat alarming. Will your son do shots until puberty or when will they stop?

WoW! I had NO idea there were so many people out there who share my struggles! My DS will be 3 in March, and weighs just 20.5 lbs. Just reading this blog and comments makes me feel better! We have 4 children, all are low weight, but none like Jared. He was 3lbs at birth and has struggled since. We did find a gene loss and recently switched GI's when mine literally said - I don't care what the Genetics Dr. says, we HAVE to get him to gain weight. Someday we may know better what is "wrong" with my seemingly healthy, active, beautiful child, but for now I plan on just going day to day!